Living with Benign Twitching

[SparkySunshine97]

Hi Community I hope you're all well ,My 2 1/2 year journey with this benign twitching, pain and general spaced out feeling has led me to the Breakspear medical group in the UK!! Like most I have spent 2 years under the auspices of a very nice neuro who has tested me, given me MRI's, EMG's and check ups. As an MS specialist has told me no way have you got the decease and nor do you have ALS. So my journey has taken me to a private medical facility who deal with stuff the UK health service will not touch. My initial examination has shown that I have lost the ability to feel fibration to the front calves although I can feel "touch". I am undergoing a raft of tests alot I do not understand.But the first thing the specialist said was that you have signs of B12 deficiency. She asked me if I had tests done, when I told her that I had one blood test and everything came back normal, she smiled and said well normal has a range in general medicine that is unreliable within the Vitamin B world. She is putting me on B12 injections weekly, cod liver oil, primrose oil. I'm not allowed Caffine or Alcohol until after a battery of tests. She explained that there are two key causes for fasics, the muscle and the wiring to the brain. Low magnesium levels can effect the muscles as it is the lubricant that sits between the strands of muscle. B12 protects the sheathing around the nerves and the helps with the delivery of inputs to the nerves.She wants to look at the possibility of malabsorbption of B12 in the gut. For now she has asked me to work with injections of B12 till then. Once I have the tests done (around 8 different tests) I'll feed back to people.Having done some research into it, it's something I would recommend for all BFS's, I believe the test in the states costs around $60. But take it to someone who is a real toxicology specialist.Good luck

 

[bfhopeful2]

Vitamin b12 is the only thing that consistently comes back abnormal for me. Every single blood test. And I eat a lot of red meat etc. Mine is in the high 200's. I think under 400 is where neurological symptoms can appear.

 

[nomad37]

My b12 reading was 330 but my family doctor said its normal. I eat meat a lot also. But I noticed in Japan they said if you are below 500 you are considered b12 deficiency. But I am interested in this research the OP is going so keep us updated.cheers

 

[SparkySunshine97]

Hi all,You may eat a lot of things with high levels of b12, but if you have malabsorption issues then it doesn't matter how much b12 you are eating in your food. If you have these issues b12 capsules will not suffice.I'm there next week for blood tests I'll post back )

 

[BlueMan]

I too have a low vitamin B12 level (289 at last check). The reference range in the US is currently 210 to 910 pg/mL for a person who has no signs or symptoms related to a deficiency. In a person who does have such symptoms, the lower limit is raised to 400. Japan's range is much higher and narrower than most countries.I'm currently being evaluated for celiac disease because of the low B12 and low vitamin D levels that were found recently. Vitamin D is absorbed in the duodenum (first part of the small intestine, right after the stomach), which is where celiac typically does most of its damage. But proper production and release of fat-digesting enzymes into the duodenum is important for digestion and absorption of vitamin D, so problems with the liver, gall bladder, or pancreas can contribute to low vitamin D levels. B12 on the other hand is absorbed in the ileum (last part of the small intestine, right before the colon/large intestine), but it has to be picked up in the stomach by intrinsic factor and transported to the ileum. An autoimmune disease known as pernicious anemia can lead to B12 deficiency, but is easily detected because of the damage to red blood cells (macrocytic anemia) visible on a blood smear.I have eaten plenty of B12-rich foods for many years, plus supplemented both these vitamins at high levels because of their known association with muscle/nerve troubles. I also track what I eat using nutrition software, so I have an accurate record of how much I've been taking in. As a result, I now know I have some sort of malabsorption issue.

 

[SparkySunshine97]

Hi Aoi,Thanks for the information, I'm waiting for the results of an evaluation of my autonomic nervous system. She has ordered the following tests:Fat cell pesticidesFructose studyRed cell magnesium profileVitamin profileHair elementsWhole blood elementsHaematology and bio chemistry with electrolytesUrine organic acids assayDetoxiGenomic profileImmunoserology of Lyme b panelComprehensive nutritional analysisMethylation pathwayI'll feed back soon )